News! News! News!

Hey everyone! Logan here! Just filling you in on some great news we all have to share! We are starting to make shirts! There is a link on the page titled "news" so go check that out to know more about it! Also on the "news" page you will see we have an official logo! How cool is that? I think it's pretty cool! Go check it out! we are so proud of it! And all the hard work Anthonoy Saint Thomas! Thank you so much! anyways please check that out because we will update it all the time when we have new news :)

Everyday Struggles

Hey readers, Jake here, I'm not going to say much this time. But,  I had a really busy weekend that I'd love to tell you guys about. As you know I have Epilepsy, and I have to take medication for it, but my refills ran out and I was running out of pills. I was supposed to get more on the 25 of July but I was at camp. So I had to cut back and take 1 instead of 2, then none. I started to have withdrawal symptoms. Like mood swings, headaches and just getting sick. So I had a small cold, which is bad because I had Lollapalooza to go to. But before Lolla, I had work which was difficult with my headaches. When I got there it was very hot, and I stood in very large crowds, which only made things worse. I got really dizzy at points of the day. I had at least 3 waters on me at a time. Other than all that I had a great time with my friends that where there. I saw tons of great bands play, my favorites were, Vampire Weekend and Two Door Cinema Club. I have my refill now and I am feeling a lot better.  So I guess this is it for now, until next time. Have a great day!

My New Post

 Hello Everyone This is Dylan Here.  Ever since my last post i just have been very busy working on my 2 summer assignments going into my junior year of HS.  One is for English class and the other is for AP Bio.  I have always had a huge interest in science and the world around me.  I always have expressed interest in wanting to be an engineer when i grow up and have been working hard in HS so i can get into a good college that will help me achieve my dream. on another note i am super excited to be going to Canada next week with my family. i love traveling. i hope to tell you all about it in my next post but for now i hope you all enjoy the rest of your summer and i hope to talk to you more soon.

Busy Busy Bee

Hey everyone! Logan here! August so far has been a crazy busy month for me! For starters starting the blog, looking into different beauty schools in my area. I just graduated highschool this year and i'm so excited to be out looking for schools but finding the right one is hard. You see I have a passion for hair and makeup, always have since I was a little girl. So not only am i been looking I've been practicing. I went from having blue and black hair this month to dark brown hair! I did a photo shoot with my beautiful best friend

Photography is just another one of my passion. I love the way you can capture such beauty in a single shot of the camera. These are the non-edit version of the pictures but anyways i should get back on topic about August here!

I'm trying to find a job because I've been stressing out lately at home and planning on moving out but that will be another post. I've been enjoying my last summer as a kid being with my friends and boyfriend who fully accepts and loves the fact I have Nf. He find my spots the most adorable thing ever. Isn't that just an awhhh moment? Anyways where was I? Oh yeah Also my eighteenth birthday is coming up in the next few weeks and im totally excited! Who would want a birthday post? Just let me know and i"ll do it because I love talking to you guy's even though were not really talking, haha silly me anyways. Not much more to say right now. I know August has just started though so i'm sure i'll have more to say soon.

My next post!

Hey everyone! Allison Here!

This week has been very busy for me! I am working on my gold award project which is the highest award a girl scout can earn and it is comparable to the boy scout eagle award. I am also packing and getting ready to go to Cape Cod with some of my best friends. I met David and Michelle thru my NF in a way. At age 8 I was diagnosed with Moya Moya , something I will talk about more later. my mom met Michelle through a support group website for parents. a year after our surgery's we met! Michelle , David ,myself and my mom have gone on more then 20 vacations together! David does not have NF but he knows what it is like to experience a medical illness and he shared a illness that many people with NF experience. if it is alright with all of you me and David are going to do a joint blog next week on moya moya, our friendship and our trip! what do you say? leave your comments below, if you would rather us keep it to strictly NF people just let us know. looking forward to tell you all about moya moya !

Lizzy's Amazing Story!

Hey there, my name is Lizzy Hubbard. About 19 years ago when I was coming close to my 3rd birthday my parents noticed that I was different. They took me to the doctor thinking I had a lazy eye when the doctors told them it was something else they had a biopsy done. That’s when we found out I had Neurofibromatosis type 1. When the doctors told my parents “oh she has tumors don’t worry about it” and basically left it at that. Since no one else in my family has NF their first thought was “oh my god it’s cancer!”
I’m not sure when I started getting the café aux lait spots, neither does my mother. About the time I was 4 or 5 I started to get two tumors in my face and neck that affected how I looked. I didn’t really think anything of it until I was 6; that’s when I started getting made fun of. I refused to look in mirrors because when I did I would start sobbing. Shortly after I started school my mom got notified about an organization called “Children’s Craniofacial Association” this was an organization for children and their families who have craniofacial anomalies. This organization has a retreat each year in a different state so families can get together and be able to be with others who might have similar stories. My first year at the retreat was in 1998 when it was in Dallas, Texas. After that long weekend there was an instant change in my attitude about myself, I didn’t cry anymore when I saw my reflection and I felt good about myself. I still got picked on by I knew how to cope with it better.
I had also started getting more MRI’s at least once a year. They stopped sedating me when I was 6 because of an incident with the anesthetic. I kept trying to sit up in the MRI and my mom kept giving me my Adderal so it didn’t mix well and I got really sick because of it. I still get at least one MRI a year as well as the occasional pet scan or CT scan.
I don’t remember when exactly but about the time between 7-11 I had a few surgeries to help my teeth grow in that were blocked by tumors, and getting wisdom teeth removed from my sinus cavity, the doctor who told me my teeth were up in my sinuses ironically had NF type 2 so he was able to give me insight on what someone with NF2 might have to deal with, just so I could know how the different types cold effect someone.
Middle school started to prove to be one of the worst years of my I was a loner and didn’t have many friends. Mainly because I wasn’t athletic, when I tried to play sports I was terribly uncoordinated and felt like I didn’t fit in.  5th grade a girl came to school there again who I knew from 1st grade. She proved to not be a real friend because she would try to make me do things I didn’t want to do and became abusive when I didn’t comply with her, and I began to feel ugly and that because of how I looked I wasn’t good enough. Thankfully when I got into 8th grade I actually made real friends and was able to start showing that I wasn’t just this weird uncoordinated loser. I actually started to feel pretty and good about myself, and people wanted to hang out with me at school.
This was able to go on even in high school, but unfortunately my 9th grade year I put on a good amount of weight and my self-esteem went back into a severe low because if the tumors, and I started to self-harm. It was that summer that I ended up with body dismorphic disorder and stopped eating. Dropped down from over 130-105. That’s when I really started to change, I started to grow into my tumors, they weren’t as noticeable other than in my nose being slightly deformed. I have kids tell me a lot “your nose looks funny” or “you have a big nose” but I learned to let those comments brush off me. I did start to feel pretty again. People in my grade knew me as “the nice girl.” I still got made fun of by the upper classes. It wasn’t until my junior year that things changed for me, either I got more of a backbone with people or people just stopped caring. Maybe it was a mixture of both things.  I also started to realize how hard classes were due to learning disabilities caused by the NF, no one in my family… including myself believed I would ever graduate high school. I also started having an issue with a tumor that developed in my leg that when we got it removed that it was “pre-cancerous” thankfully it got removed when it did.
Fast forward to June 12th 2009 the day my family was able to see a feat we all deemed impossible, I graduated high school, granted it was close to the bottom of the class but I still graduated. Unfortunately I was dating a really big jerk who took all the progress on my self-esteem away. He was abusive and just awful. I became someone who I hated and started to self-harm even more. At least I smartened up and got back on track with my life after I dumped him. I was able to do something even better, and that was to be the first grandchild on both sides to graduate from college. Even through the NF and learning disabilities.
Recently I found a tumor in my back that started to cause issues and constant pain, but unfortunately they can’t remove it, same goes for the tumors in my face. At least I stopped caring what people thought about me.
There is one big thing that helps me get by, and that is each year having the opportunity to go to Camp New Friends and see my “NF” Family. Without then I wouldn’t be as far as I have gotten today. I know that if I have a problem I can go to them, even if it’s just needing a shoulder to cry on.

We Have a Logo!

Thanks to Anthony Saint Thomas for designing the logo for us! We love it. What do you guys think? Comment below! We hope you like it as much as we do! We will be making shirts soon.